I am a patient's of KDM, live in Austria, and have been treated by him over 2 1/2 years now. I am on GcMAF since November (add. of using Nexavir + Vit B12 IM injections + some nutrional supplements) and can say that, at first, I felt much better, actually better than I have ever felt ever since I got CFS, for a while. After a couple of weeks, I kinda had a bit of a setback but, that said, I do need to say that I push myself very much since I am still working full time and it is normal for me to have push and crash phases on a regular basis. So it's hard for me to judge whether the GcMAF is not working that well anymore or whether it's just because I pushed myself too much. It could also be, as I believe Judy Mikovits had mentioned, that maybe some of the XMRV/MLV reservoirs might re-activate once GcMAF starts working. I will see him again in March and I guess he will do some blood tests to see how it's been working apart from how I feel of course. FYI, the first injection was IV at the clinic and the rest I inject IM myself since I was advise that I could do this. i did hear that IV are more effective.
I am quite a "typical" CFS patient with very high EBV levels, MLV - related viruses positive, high cytokines, low NK cells, leaky gut etc. etc. etc.

Hope this helps and let me know if you would like to have further info.

I have been taking it for about 7 weeks and it is amazing. I feel like a brand new person and actually I am ready to start exercising, something I haven't done in almost 8 years. I have had the illness since 1990 and this is truly the magic bullet.

I am a patient's of KDM, live in Austria, and have been treated by him over 2 1/2 years now. I am on GcMAF since November (add. of using Nexavir + Vit B12 IM injections + some nutrional supplements) and can say that, at first, I felt much better, actually better than I have ever felt ever since I got CFS, for a while. After a couple of weeks, I kinda had a bit of a setback but, that said, I do need to say that I push myself very much since I am still working full time and it is normal for me to have push and crash phases on a regular basis. So it's hard for me to judge whether the GcMAF is not working that well anymore or whether it's just because I pushed myself too much. It could also be, as I believe Judy Mikovits had mentioned, that maybe some of the XMRV/MLV reservoirs might re-activate once GcMAF starts working. I will see him again in March and I guess he will do some blood tests to see how it's been working apart from how I feel of course. FYI, the first injection was IV at the clinic and the rest I inject IM myself since I was advise that I could do this. i did hear that IV are more effective.
I am quite a "typical" CFS patient with very high EBV levels, MLV - related viruses positive, high cytokines, low NK cells, leaky gut etc. etc. etc.

Hope this helps and let me know if you would like to have further info.

Regards
Vox

Click to expand...

Thanks Vox....That's great you had an initially good response. Has anything else worked well with you since you've been with him? Has he ever been able to get your EBV or cytokine levels down?

I have been taking it for about 7 weeks and it is amazing. I feel like a brand new person and actually I am ready to start exercising, something I haven't done in almost 8 years. I have had the illness since 1990 and this is truly the magic bullet.
David

Click to expand...

David that is great news! Just out of interest do you happen to know what your VDR genetics are like (and from which lab)? Don't worry if not, the main thing is that you are responding. Fantastic news.

good question cort, can't tell you yet about EBV since I will check my levels of EBV in March, they were really elevated 7000+ (normal range 50), but lets see after the GcMAF (also supposed to work on EBV) + Nexavir and Valtrex. Will let you know. He did manage to get my cytokines down but they always go up again, as I am sure you know..

Oh forgot to tell you, I will start Deplin in approx. 2 weeks. We will include it into my current treatment regiment. I will tell you how that's working along with GcMaf etc. If you are interested I am currently taking:

Perhaps it works for a few weeks only after which something is up-regulated that counter act the effect of GcMaf.. It seems to me that people are feeling better initially then revert to their initial state.

This is a common symptom of resistance and research should be done to know how to counter act it.

Cort, I don't think I can respond to this poll because I tested negative for XMRV by pcr/culture and my serology result is not in yet. Nevertheless, based on my test results (and probably because I've had ME/CFS for 18yrs) KDM has put me on GcMAF and Nexavir (besides other things). Today I had my 4th GcMAF injection (IV). I don't think I can report any significant improvement yet. That said, yesterday I had a very important and stressful work-related 3hr meeting. (I work very part-time with flexible hours). Normally such a meeting would knock me out for days and today I was just about ok. So for me that's very positive.

Thanks for this poll, but it is going to be hard to quantify as some people respond well within weeks, others feel worse for some weeks or months and then start to feel better. Some don't notice anything for many weeks or months and some never notice anything. Also, we are not all using the same source product.

I don't know how you would do it, but some time marker would make this poll more accurate. This is always the trouble with polls--it is hard to word them in a way to get meaningful statistical results.

I am not going to vote for a while cause my symptoms reactions change all the time (after 4 injections).

Cort, I'd also like to add-you might want to consider separating the poll into types of gcmaf: PPS (israel--Yamamoto's), KDM, and BGLI. Not all are created equal, so that would certainly improve the usefulness of the poll.

Thanks for this poll, but it is going to be hard to quantify as some people respond well within weeks, others feel worse for some weeks or months and then start to feel better. Some don't notice anything for many weeks or months and some never notice anything. Also, we are not all using the same source product.

I don't know how you would do it, but some time marker would make this poll more accurate. This is always the trouble with polls--it is hard to word them in a way to get meaningful statistical results.

I am not going to vote for a while cause my symptoms reactions change all the time (after 4 injections).

I am patient of KDM since 2005. I tested MLV positive (PCR) in October 2010, XMRV positive in December 2010 (culture test). Since November 2011 I am on GcMAF, weekly IV-injection. From my genetic disposition I will need 30 to 40 injections. Since April 2007 I have a daily NEXAVIR injection (IM) which helped a lot.

When I became patient of KDM I was down to a energy level of about 30 %, now
I am oscillating around 80 %.

I am patient of KDM since 2005. I tested MLV positive (PCR) in October 2010, XMRV positive in December 2010 (culture test). Since November 2011 I am on GcMAF, weekly IV-injection. From my genetic disposition I will need 30 to 40 injections.

When I became patient of KDM I was down to a energy level of about 30 %, now
I am oscillating around 80 %.

Click to expand...

Thanks for posting eikmar! Welcome.

I am a new KDM patient and have had 4 IV injections. I haven't started anything else yet as my test results are not in except for XMRV positive by culture.

I second the request that you fill out the spreadsheet so that we can try to track patterns and progress. Your progress is very encouraging!

When you say that according to your genetics you will need between 30 an 40 injections, could you tell us more? I tested low responder on FOK and moderate to low on BSM and am trying to guess about how many injections I will need. What did your VDR test report?

I am noticing changes after 4 injections but at this stage it is hard to tall what is happening.

I see you are from Germany. I know Diesel is also from Germany. Is there a German forum where patients of KDM are posting their progress? I am asking because we know about the Dutch forum and are thinking of trying to put together a spreadsheet including as many patients taking GcMAF as we can find. I'm sure that there are many more than those on this forum--as you really need English (or be very determined) to post on this forum.

The more patient data that we can collect from patients on other forums, the more useful it will be--both for us and for practitioners.

Perhaps it works for a few weeks only after which something is up-regulated that counter act the effect of GcMaf.. It seems to me that people are feeling better initially then revert to their initial state.

This is a common symptom of resistance and research should be done to know how to counter act it.

Click to expand...

I think you're right. I get the same improvement the first days/a short week after beginning eith certain (immune modulatory) antibiotics, and then it reverts back to 'normally ill'. And I have always wondered why. I have been thinking reactions like you describe could be it. I mean, why else work for some days, and then revert. Especially antiobiotics, when they work, should get you better and better.

First, congrats for DAVID and EIKMAR!! It is encouraging to know about your great improvements!

Hi VOX, I am very glad that you also are getting better with the whole treatment, although it is difficult to discern for you what is causing the relapses, etc. May I ask you a few things?:

- You say you will be put on Deplin soon. This is great! It is 5-methyl-THF (I believe), and you will be supporting the methylation cycle (together with B12), something I think is vital to treat XMRV! Is there any reason why Prof De Meirleir (KDM) decided to prescribe it precisely now for you?

- You say that you are taking Multivitamins & nutr. Suppl. Blend. Is it IV?Did you ask for it or was KDM who prescribe it? What blend are you taking?

- Also, you say you are on L-Glutathione high dose liquidIs it oral? I ask this because as far as I understand, oral GSH is not absorbed in the gut
Thanks in advance,
Best,
Sergio